recurrent psa 0.2

Hi Joe,

I'm in a similar situation to you, although I'm two and a half years post op and my PSA has not reached 0.2 yet, both my urologist and oncologist are in agreement that early salvage RT to the prostate bed is the best way forward (or I could wait until the magic 0.2 and have some scans).

Treatment for me entails 20 sessions spread over 4 weeks (5 days x 4) so I get weekends off. My treatment is at another hospital some 45+ minutes drive away so travel is something to consider. 

As for symptoms (going by my paperwork) the main ones being tiredness, urinary frequency, bowel frequency and loose stools apparently. I had to chuckle that there is a 10-50% chance of hair loss in the treatment area. Other symptoms such as infertility and changes in ejaculate are listed, but that happened with RALP.

Hopefully, others who have had RT will see this and add any symptoms. 

Maybe ask what are the pros and cons of radiotherapy now against waiting for scans. Maybe your original diagnosis (T2 or T3?) and post op histology would have a bearing on the decision?

Either way, good luck. 

Kev.

Edited by member 10 Jun 2022 at 10:32  | Reason: Typo

However, you mention that it is the urologist who is giving you this advice? Generally speaking, this is not the area of expertise of a surgeon and you should really have been referred to an oncologist when your PSA reached 0.16. The oncologist is best placed to advise you on next steps.

Joe, my cancer 'came back' a year after my prostatectomy.  To cut my story short, I had a psma scan which completely changed the salvage RT treatment field.  I really am a firm advocate of a psma ga68 scan.  It helps take the guesswork out of the area to treat.  I'd also insist on some form of hormone treatment.  I had 18 months of Bicalutimide. 

Almost 4 years post SRT, my psa is >0.006.  I've been discharged from oncology.  You have every reason to hope. I was G 4+5 and I'm in a really good place.

Personally, I don't think you should wait until 0.4 for a psma scan but others here who understand these things better may have a more accurate view on that

Hi,  From what I read there is a chance of finding something with a psma test at 0.2.    At 0.4 there is a better chance but waiting that long is more risky.   If the expected cost isn't too much it might be worth finding about places to have a private scan and if they don't refer you quickly to oncology say you're looking at private scans and will they use it if you do.  I'm not sure of the mechanics of getting a private scan but would think it worth getting your hospitals agreement.   Probably the surgeon isn't the right person to answer this. 

On the other hand you might think it worth having RT without a scan although the latest thinking is that it can refine how its targeted.   All the best.

Edited by member 10 Jun 2022 at 22:33  | Reason: Not specified

.in the meantime its a canny weather forecast and i hope you all enjoy a relaxing weekend

,joe

Joe, there was a lot of talk about PSMA scans five years ago when I had a recurrence after surgery. I did have positive margins and extraprostatic extension so always a possibility the cells were local. My oncologist said salvage RT to the prostate bed was " a very educated guess based on years of experience"  As I previously mentioned it didn't work for me and I was unfortunately in the 5 percent of men who suffer with bladder damage. 

Barry sent me a link to a you tube video about  treatment for PCa, attached is a link to another part of the youtube video which us about recurrence, it may lead you to ask a few more questions. Might be worth calling the nurses on this site, the number is at the top.

https://youtu.be/Q2joD360_pI

My scan next week is with the NHS, when I chased up the appointment, I asked using my private health insurance and was told it would not get me a quicker appointment. My appointment is at 17.00, they are obviously putting in some extra hours in to reduce the backlog.

Thanks Chris 

Lyn's comment reminds me there are two quotes I found useful.  One is 'don't get ahead of yourself' from a PCUK nurse several years ago.  More recently by a dermatologist 'we are where we are'.  They sort of get you off your horse galloping into the desert.

I had surgery about 6 years ago, but after a couple of years PSA started being a little higher than "undetectable". For some reason it seemed to stall a while in the teens but last year clearly breached 0.2 and I was referred to an oncologist.

The story was that I was in a good position, in that with PSA less than 0.5 and doubling time more than six months salvage RT was likely to be very effective. But also that scans often gave little useful information when PSA was less than 0.5, and that waiting till they might be informative meant there would be more cancer and thus RT needed to work somewhat better. So better to get treated.

So at the moment I am on HT, and PSA has now dropped to undetectable which is good. Unfortunately I am still waiting for RT, partly because they wanted my colon checking (and when that happened a polyp was removed from my rectum) but also because post-Covid both GPs and oncologists have been catching up with a backlog of cases but the availability of RT slots remains fixed. I am just hoping they can schedule it so I don't need yet another HT injection, I am getting a bit fed up of those.

The MSK nomograms are the most reliable, as they are based on a huge data set. However, outcomes for men in the UK are slightly worse than in the US, and outcomes for men in the North are worse than for men in London / South East so most UK hospitals now have their own version of the MSK nomogram with locally adjusted algorithms. It is still useful to check the relevant MSK but then adjust your expectations down a little bit.

How did you know that John & I dance?

I did a nomogram some time ago and hormones plus RT was significantly better than just RT. 

Watching the YouTube channel being bandied about on here, with my Gleason of 4+4 Dr Scholz talks of two lots of hormones and chemo to start off with, if the patient can take it.  They also emphasise that the chemo used for PCa, taxere I think it was, is no-where near as toxic as that for other cancers.  I'm just arming myself with background information and reality will strike at some point in the coming months. 

My psa is rising faster than yours but was just beneath 0.1 at the last check.  I reckon it will be over 0.1 now.  A psma scan is said to be only 30% accurate at psa 0.2 and so is it worth it and do I want to know but I think with my Gleason it'll be worth paying for it if necessary.   At your age they should be more likely to throw the book at it.  I don't know what your Gleason is, it isn't in your profile.

The other bit of information that helps an onco to make this decision is your post-op pathology; if you had positive margins then salvage RT is probably a good bet.

,thanks and best wishes to all.

If you're happy to wait to 0.4 then it maybe means it will take a little longer which sounds good, although wait for the Onco's opinion.

 I'll be arriving at 9am at my next test.  What did you have for breakfast.

.on the one hand the lowering of psa ,as peter says ,is a positive as it may indicate delay of any required treatment,but doubt in the process never good (why measure so sensitively if measurements can vary due to outside factors) and as trend over 12 months still upward,and as lyn says psa still too high for a prostate less man,i have to place trust in oncology..be interesting if they have different emphasis to urologist.,though as my psa now below 0.2,im now below treatment threshold on tyneside.

..as for my breakfast im a granola grandad,well thats what my grandaughter calls me.thank you,gan canny,joe

joe

i divvnt knaa whats ganning on, but i like it.

.glad i didnt start radiotherapy at 0.2..

.during my last consultation the oncologist did mention he;s seen some men whose psa rise towards 0,2 then stabilise.guess im one of those..cant infer to anybody else's results,or tothe future,,but maybe food for thought towards the debate

,wishing all a canny christmas,

thats interesting that your psa growth rate is seasonal;

for the 5 years up to this summer my psa was slowly accelerating from 0.03 post op to a high 0f 0.21 in june,,i was offered salvage radiotherapy but also the possibility to wait,until psa reached 0.4,since then my psa has fluctuated around 0.18...im hopeful now of it never reaching 0.4,,but as doris day sang que sera sera..have a lovely christmas.